Special Needs

Hearing loss

Does anyone have any experience with hearing loss? I always post about my son, but now it turns out my 9 months old baby girl has moderate/severe hearing loss in both ears. Anyone have an experience to share? I'm so sad over this, and that it was missed in the newborn screens and only just now diagnosed. We're waiting on hearing aids/further testing, but just trying to process it all.
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Re: Hearing loss

  • We had hearing issues with dd2 but nothing to the extent you are describing. Im so sorry you are dealing with this but just wanted to hop in and give hugs. Both of our girls have medical issues so I can appreciate what you are going through with regards to a different child having a new unexpected diagnosis.
    We have a couple mommas who im sure will be very helpful.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Assembly_ReqdAssembly_Reqd member
    edited October 2013
    Aww hugs honey!! Everything is going to be O.K. really.

    Nate has mild-moderate loss and wears hearing aids. In the FAQ I think i posted a bunch of info.....Feel free to ask me any questions. it's O.K. to feel devastated and angry. The most important thing is to get her aided as soon as possible. You will need to monitor with additional hearing tests every 4-6 months to be sure the loss is not progressive, because that could change your intervention options.

    You should call early intervention and tell them your daughter is deaf. I know right now you feel like that is a bad four letter word. I did too. Deafness is any level of hearing loss and using that term with the early intervention peeps will get them to hop to it. I downplayed Nate's hearing loss and EI let me do it. If they do not hook you up with a Teacher of the Deaf then call your local school for the deaf and self-refer. They may even have a parent support group like ours does which for me has been wonderful. I LOVE my mommy friends who have D/HOH kids. Nate has been going to school there since he was 9 months old. He was actually eligible to attend at six months old, but they were off for the summer. It also took me a while to self-refer to the deaf school. My Ei service coord. never mentioned it because to her, Nate wasn't deaf enough. Insert eye roll here.

    Another good place to go is the American Society for Deaf Children. It is a parent run national organization. Don't freak out about educational options. You have plenty of time to figure out what school choice will the best for your DD. She will be the one who determines it. Again, ((hugs)).
    WAY 2 Cool 4 School


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  • DS has the same degree of hearing loss and wears hearing aids. He was not aided until a few weeks after his first birthday due to insurance issues. As a pp suggested, reach out to early intervention. I decided to go the auditory oral route wherein he is not taught any sign language he learns to listen and speak. In my case with early intervention it was helpful that I knew the route I wanted to take with his communication at the get go so they were able to set up the necessary services in no time. He is now in Pre K at a typical elementary school that has a deaf/hard of hearing program. He has been going to that school since the start of the new school year and he is doing great. His teachers joke that he may be the first student they have that is ready for mainstream by the time he is in kindie. The school mainstreams them whenever they think the child is ready. I don't want to ramble so if you have any questions I will be happy to help.
  • @happy2bnappy

    Yeah I really wasn't sure where to put Nate for the longest time. Initially, I totally thought he would be mainstreamed.I was super pissed and reluctant to learn ASL because I thought he would talk one day. He has a lot of other needs though, too.

    We also could have never guessed that he would not be able to talk due to dysarthria (stroke victims can get this diagnosis if they no longer have control of portions of their mouth).

    Mainstreaming is a great choice, too. YOU decide. For Nate the best option was a deaf school. He expresses himself with ASL and the class sizes are small enough (8-10 kids with 2 teachers) that he can get a lot more attention for his other needs.
    WAY 2 Cool 4 School


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  • Thanks so much for sharing your experiences. I still feel like I'm stuck in a bad dream and almost am mourning the loss of the typical experience I thought we were having after going through so much with my son. At least his therapies have eased up quite a bit, so we can get on this, though maintaining full-time jobs sounds so overwhelming. We are in the DC area and COL is so high that we both need to work.

    I appreciate the guidance on schools. Even though it's a while out, that's what I find myself obsessing about. Right now both kids are in a regular daycare center and have been doing well. But now I just don't know what to do. How much therapy and intervention am I looking at on a weekly basis for dd? What do I need to get her caught up on speech? We definitely want to focus on oral language. As far as we know, this is the only issue she has, and I'm praying that's the case though we will learn more next week I guess. I know there are some schools around here. Does insurance cover tuition? Or subsidize it? The one everyone recommends is very expensive. And then how do I manage part-time preschool and then after care plus daycare for my son? What have you guys done?

    As for the hearing aids, does it restore hearing to normal levels or do sounds still seem distorted as far as you know? Have you ever considered cochlear implants too?

    I have called EI and have an auditory-verbal therapy apt set up for this week and I think they also have a parent-infant support group.

    I just feel so sad. For some reason, even though my son had extensive issues, this feels so much harder since with him there was always the hope, the dangling carrot, of him completely catching up and this being a distant memory one day. And really, after years of intensive therapy and many procedures/surgeries, he really has come so far and nobody would ever know what he's been through. But this. It feels so permanent. She's such a sweet baby girl and I just never saw this coming. I am so upset that she fell through the cracks of the infant screening.

    Anyhow, I can't even begin to tell you how much your stories and experiences mean to me. You're right. I hate the word 'deaf' right now. I've been using it to try to desensitize myself, but I'm still not fully in an acceptance stage. I keep thinking that maybe they were wrong and there really is just fluid somewhere and with tubes it will all go away. I know that won't happen, but that's just where I am.

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  • Hugs to you, I have an idea how you may be feeling ( DS is an only child). I went through that stage, I cried for days, wracked my brain to figure out if it was something I did or didn't do during pregnancy. I also was in denial for a while because DH and I didn't know there were varying degrees of hearing loss, we thought it was either he was hearing or not. So the fact that he responded to sounds made us think the diagnosis was wrong. We did not realize he was responding to only some sounds.
    The hardest part was the early days for me mainly because for one he was a preemie and then I had a few appointments to rule out other issues that may be common with deaf/HOH kids. After we got past those appointments, all we had was ST for 30 mins 2x a week. We had to do hearing evals every 3 mths like Assembly Required mentioned. DS had to have new ear molds every 4-6 weeks because he outgrew them in no time. We also had a DHH (deaf and hard of hearing) teacher from the school district come in once a week. I am not sure how they would do it where you are but for the first year the teacher came to our home for the lessons. When I went back to work the teacher went to his daycare. He was in a regular daycare for almost 2 yrs. And it helped a lot with him being around typical hearing kids.
    Now that he started Preschool he only does private ST once a week because he gets group ST at school. 
    Things will not be as hectic after the initial stage, which coincided with me coming to terms with his diagnosis. I remember there was a stage where I could not tell people he has hearing loss without tearing up, now it is nothing. I do tend to tell people he has hearing loss because I find that people look at me like I am crazy if I say deaf then he respond to a voice or sound lol.
    DH and I are doing the wait and see dance to decide if we are going to do cochlear implant. So far he seem to be doing just fine with the hearing aids. His speech is clear (as clear as you get from a 3 yo lol) I have heard that the implants make sounds a lot clearer, there is someone on this board whose DS has implants don't remember who.
    I am in Florida, in my area there is not much assistance in regards to daycare. I do know that once she ages out of EI she would automatically qualify for preschool (of course its up to you). If you go the listening and speaking route there are organizations like AG Bell that has scholarships that you can apply for as a member which can be used for childcare. AG Bell's website has a section that helps you through this time which happens to be the toughest. There are also stories from parents of kids who were/are an inspiration to me. There are also DHH teenagers and college students sharing their triumphs and successes and of course their struggles. The first six months of AG Bell membership is free so you get to read all the info on the site.  Another organization that I found very helpful was the John Tracy Clinic they give you lessons which you can take either online or if you choose they will mail you the lessons. JTC lessons pretty much just teach you how to teach your child to listen and speak and the lessons are free.
    When you get with EI and you are set up with a speech therapist, I find that these people have a wealth of knowledge.
    P.S.
    The school district in my area also provided a counselor who was/is very knowledgeable. She is also deaf (lost hearing @ age 5 due to meningitis) and does ASL, lip reading and of course she is verbal. She was able answer my questions and if she didn't know she would find out within 24 hrs. The fact that she was deaf helped me in the initial stages to realize that DS will be just fine. She was kinda like a lifeline to me (I say was because she is now retired, but we are still in touch)
  • I want to try and answer a few of your specific questions, but i need to go to a damn 31 party.....

    Do you reside in maryland? I can hook you up with a great program called Parent Connections which is a parent mentoring program. I will disclose that I am one of the mentors. You can get matched up with a mentor parent who can be a shoulder to lean on and help you figure out what options are out there. The parent can be someone who has had the same journey you are thinking of going on (Eg, Ci's, mainstreaming, deaf school, private school etc etc)  The support is totally whatever you want: someone to call and ask questions, an email contact, and we also have events around the state for D/HOH parents to meet each other.

    PM me if you are interested. I may be able to give you some contacts for other states as well.

    I will be back later to get to some of your specific ???...
    WAY 2 Cool 4 School


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  • I want to try and answer a few of your specific questions, but i need to go to a damn 31 party.....

    Do you reside in maryland? I can hook you up with a great program called Parent Connections which is a parent mentoring program. I will disclose that I am one of the mentors. You can get matched up with a mentor parent who can be a shoulder to lean on and help you figure out what options are out there. The parent can be someone who has had the same journey you are thinking of going on (Eg, Ci's, mainstreaming, deaf school, private school etc etc)  The support is totally whatever you want: someone to call and ask questions, an email contact, and we also have events around the state for D/HOH parents to meet each other.

    PM me if you are interested. I may be able to give you some contacts for other states as well.

    I will be back later to get to some of your specific ???...

    Thanks so much. I am in Maryland so I'll PM you.
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  • mrsccarla said:

    Man, I have been itching to post but my phone wouldn't let me. My DS failed his NHS but wasn't diagnosed until 6 months old. And wasn't aided until 8 months old, so don't feel bad about this.

    What type of moderate-severe HL is it?

    DS's is a bilateral sensorineural hearing loss which stems from nerve damage which cannot be fixed with a CI. However, ALL sources indicate that he will be able to hear just fine with hearing aids. He is also moderate-severe. https://www.youtube.com/watch?v=0gb2Q8v72LU

    Yes, it is okay to grieve.

    I still grieve often for the hope of a "typical" child. It is okay. I, along with many of these ladies on SN will always be here. You can reach me at mrs.ccarla at gmail anytime.

    It is also normal to think about school.

    If you check out my many MANY blog posts about my son, you will know this was our top priority. If you have a chance, check out as many different programs in your area as you can. This may help you decide what you want for your child. I wanted to do baby signs before DS was born, but then after the diagnosis, I was lost. Don't discount sign language. Our DS learns a sign and attempts the word for months before he finally can say the word without the sign and us be able to understand it. It helps so much with our communication process, and many that come out of our son's preschool are able to talk so clearly thanks to the total communication process. But you have to decide what you want to do. There is no one way to do it. We want our son to be mainstreamed and all the specialists have told us there is no reason why he cannot be. Start working with her now. Don't let her ever just point, make her at least try to sound out something at least once.

     

    Yes, check into your early intervention program as a starting point on what to work with her on.

    As far as funding, we have had SOME help with our speech and language preschool tuition from Easter Seals and have applied for the Alexander Graham Bell Foundation Parent Infant Scholarship this year. We are looking into another scholarship from Traveler's Protection I think that is what it is called. We are not eligible for many funding because our gross income is too much. Too bad they won't use a sliding scale from all our medical bills.

    Funding for hearing aids, our #1 source was the United Healthcare Children's Foundation and the local Sertoma club. Our local Free Mason's and Lions Clubs have also offered for future hearing aids.

    Hugs


    Thanks so much for posting. Yes, this is the same type of loss my daughter has. The ENT suspects that it is a nonsyndromic genetic cause but we are just about to do all of that testing to see.

    What an interesting link. I hate that dd still can't hear. Those aids can't come fast enough. What was your son's reaction when he first got them on? I've been comforting myself a lot by watching youtube videos of baby's reactions to first hearing sounds. Amazing miracles.

    Yeah, school is a big deal to me. I want to make sure that I give both ds and dd every opportunity possible to not let their special needs stop them from doing anything in this world. I know that's what every mom on this board wants. I have the county coming next week so I will learn more then, but from what I can tell, I'm not going to love their go-to options. I've located what seems to be a great private school that was recommended by someone I was placed into contact with. We will see it tomorrow. She would be able to do half-days starting at 18 months. Right now she is in a full-time daycare that we love, so I hope she can stay there. In general, are daycares open to dealing with hearing aids? I will need to talk to them, but I hope so. If not, then we will need to get creative as my son definitely needs an environment like that.

    I am also hopeful that because the preschool for dd does SL therapy, it can be partially covered by insurance. I guess I'll see how that goes.

    I just feel like there are so many things to do here for this. I'm trying to get on top of it all.

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  • @ MsCCarla, DS has the same diagnosis and he is a candidate for CI, definitely in his left ear where the loss is severe. The right ear would come later. DH and I have decided to hold off to see how well he does with the new program with specialized classrooms as well as he is due for new HA which should do a better job with the high frequency sounds. DS is the only one in his class of four kids who wears HA and one of his classmates I am certain has sensorineural loss because his mom and I talk a lot.
    I know not every deaf/hoh person is a CI candidate but I am sure sensorineural hearing loss severe to profound are candidates.
    @ st. augbride, I doubt daycares will have a problem with your DD because it is not like they need any specialized staff, or training, or equipment for her. All I had to do for DS daycare was to show his teachers at the time how to take out his HA (for naptime) and put them back in. As he changed classes the teachers passed on the information to the new teacher. We even got a fm system after a while and the teachers were very happy to wear the microphone.

  • Hi...I'm a lurker coming out. I have a son that is now 3, but diagnosed with hearing loss at 6 months. He got his hearing aids at 18 months. 

    It is so overwhelming in the beginning, just take one step at a time. You ladies are so helpful, thank you for all the info. This is a also a huge help to this mom.


  • Here are my answers to some of your other questions:

    How much therapy and intervention am I looking at on a weekly basis for dd?

    This depends on you county. We weren't offered a TOD until I self referred to MSD. EI does have TOD that do home visits. Since we did the infant program, we were at school two mornings a week. We had home visits once a month. You can also have your TOD go to daycare and work with the teachers there, but I cannot see how this would work since the teachers are watching the other kids.

    I have not done CI speech therapy, but I know it can be hard work from what I see my friends go through. There are also more appointments after the surgery to activate the CI and then map it for your child.

    What do I need to get her caught up on speech?

    Some counties offer a speech therapist right away for deaf kids and some counties take a wait and see approach. I waited until Nate was about 15 months to start speech. We had a ton of other stuff to work on. He has speech twice a week, but that is not because of his deafness.

    Does insurance cover tuition? Or subsidize it?

    I have never heard of this. You could look into getting some tax breaks for the tuition, but I think you have to prove that you don't have any other options than the private school. You probably won't be able to prove this being in Maryland. Your public school is free and Maryland School for the Deaf is free. I am not sure about Kendall. I would track your expenditures regarding the hearing aids and any OOP you pay if you go the CI route. Include mileage to and from appointments and therapies. You need to accrue something like 7% of your income to deduct the expenses. I would see if you could even get to that number OOP before I wasted time documenting everything. Insurance premiums can be part of that deduction if you pay OOP for insurance and it is not subsidized by your employer. (I think)

    And then how do I manage part-time preschool and then after care plus daycare for my son? I

    Once your DD turns 3 and has an IEP, busing services should be provided, but not all counties will do a half day bus. I suspect that Montgomery Co would be more accommodating because the parent expectations are pretty high there. If she is in an all day preschool (MSD has all day threes) she will ride the bus and you can arrange for the bus to drop her off at the daycare. I do know a couple parents in our 2's class that were able to get busing. (2's go everyday 9-12 at MSD)

    Our challenge for child care is the fact that Nate cannot talk and needs sign language to express himself. I would feel awful putting him in a daycare that couldn't understand him. He would be isolated all day long. This is also a challenge for getting a babysitter if you go the sign language only route. Once you are in the deaf community though, babysitters are easier to find. I have been resisting pretty hard going the PECS route because I am not working right now and I honestly feel that one day he will be able to speak well enough to get his needs met. I think cognitively he could pick up PECS pretty fast if we need to get him an AAC device in the future.

    As for the hearing aids, does it restore hearing to normal levels or do sounds still seem distorted as far as you know?

    This is a good video demonstration for FM systems, but the audio is actually recorded by a hearing aid microphone so you get an idea of what it 'sounds' like. How things will sound to your child depends on the level of hearing loss and the available amplification in the aids. I would ask your audiologist what he/she expects for a level of aided hearing on your DD. You can also request a booth test while your child is aided to check their hearing level. However, a booth is an ideal listening environment because it is a soundproof room with padded walls and carpet. There will be no background noise mucking things up.

    https://www.youtube.com/watch?v=1l37lzLIgQU

    Have you ever considered cochlear implants too?

    Nate does not qualify for CI's. If he did, we would have got CI's because he has the deck stacked against him for other reasons. We probably would do the CI's if Deafness were his only problem too.
    WAY 2 Cool 4 School


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  • Oh wow, you guys. These videos and links are so incredibly helpful and that surgery is a total miracle. I see also that Stanford has a very active group working on stem cell research to regrow hair cells and ultimately restore normal hearing. They have already regrown ears and inner ear parts for mice, and now are working on this for people. I know there are reasons to be very hopeful that we will see major advances in our LO's lives for this.

    And that simulation video is just amazing--so helpful for understanding the challenges. I think we will buy an FM system to make sure dd can maximize her hearing potential at home and daycare/school.

    Our hearing aids are covered I think, so they will be here in two weeks.

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  • Hello.  I haven't been on this forum in years I think, but I found this message and just had to reply.  My son who is 13 months, is profoundly deaf in both ears. His deafness is genetic and he has a connexin 26 mutation.  He got hearing aids at 2 months of age and has had access to sound since then.  He received cochlear implants in June at 9 months of age and is doing fantastically.  He already is saying a few words.  My best advice to you is to be the best advocate for your daugher.  Research all the options and do what feels right to you.  Sounds like you are hooked up with EI and starting to get services.  The earlier you begin therapy and building that foundation the better start you will give her.  We are in VA, so not far from MD.  I would also recommend finding a local support group for parents of Deaf/HOH children if they have one in your area.  That has been such a great resource.  It is definitely overwhelming and time consuming in the beginning but it is so worth it.

    I have a blog you are welcome to check out if you'd like....www.bionicbrady.blogspot.com
    Mom to London (5), Sienna (3), and Brady (1) and...

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  • Hello.  I haven't been on this forum in years I think, but I found this message and just had to reply.  My son who is 13 months, is profoundly deaf in both ears. His deafness is genetic and he has a connexin 26 mutation.  He got hearing aids at 2 months of age and has had access to sound since then.  He received cochlear implants in June at 9 months of age and is doing fantastically.  He already is saying a few words.  My best advice to you is to be the best advocate for your daugher.  Research all the options and do what feels right to you.  Sounds like you are hooked up with EI and starting to get services.  The earlier you begin therapy and building that foundation the better start you will give her.  We are in VA, so not far from MD.  I would also recommend finding a local support group for parents of Deaf/HOH children if they have one in your area.  That has been such a great resource.  It is definitely overwhelming and time consuming in the beginning but it is so worth it.

    I have a blog you are welcome to check out if you'd like....www.bionicbrady.blogspot.com

    Thanks so much, the more stories I hear the easier it is to realize the future is bright, despite the extra needs and work involved. Thank you also for sharing your blog. Your son is adorable. The aids have been ordered so we should have them in a week or so. I just hope we can keep them on! I wonder what it will be like for her to finally hear?
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  • My son is 6 and also has severe to profound d, due to genetics. He was positiv for an otoferlin(otof) mutation. He received an implant at 12 mths and another at 22 months. We took the oral approach with him and he does fantastic. Been mainstreamed since 4. Our options were limited due to living in a rural area but the schools did fantastic with him and we worked out butts off. He's language is wonderful! There are quite a few Facebook groups too specifically for parents of children with hearing loss and cochlear implants if you wanted to seek those out.
  • My son has mixed moderately severe to sever loss, bilateral. He has had hearing aids since he was almost 4 months. Now, he talks and signs (and often adapts his communication to whether he is talking to someone hearing or deaf).
    One thing I strongly urge you to do, find some deaf adults to talk to. There are many deaf and hard of hearing people who use ASL rather than oral speech, and are successful and happy. It's important to know this! Also, language is much more important than "speech." If a child is understanding only 60% of spoken language, that child may be able to have more access through the use of ASL, or total communication.
  • Thanks so much. It's wonderful to hear everyone's experiences. Dd has been doing really well with her hearing aids on, though it is also clear that the right ear needs more so we are moving forward with a CI for that ear. We started AVT, group therapy and county services and are working for an oral only approach. I think she will do amazingly well. We are both taking partial leave to keep her home until she can start an oral school in September and we are planning to just work our butts off to get her the therapy she needs. We've met a few local families with kids who have CIs and are now completely mainstreamed, which is what we want for dd. They stressed the work involved up front to get there, so that's what we are committed to. If we need to change down the road, we will, but this feels right for our family and I'm just grateful on this Thanksgiving for my extra special baby girl.
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  • @st.augbride, how did you discover your daughters hearing loss? My DS1 has ASD and now my DS2 who is 7 months old is showing some signs of hearing loss. He isn't babbling at all, he doesnt startle to loud noises, he inconsistently looks in the direction of loud noises and I can't calm him down with my voice but he passed his newborn hearing screening and has never had an ear infection. We have an appointment to have his hearing checked on Thursday. Thank you!


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
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  • st.augbridest.augbride member
    edited December 2013
    mommy0411 said:
    @st.augbride, how did you discover your daughters hearing loss? My DS1 has ASD and now my DS2 who is 7 months old is showing some signs of hearing loss. He isn't babbling at all, he doesnt startle to loud noises, he inconsistently looks in the direction of loud noises and I can't calm him down with my voice but he passed his newborn hearing screening and has never had an ear infection. We have an appointment to have his hearing checked on Thursday. Thank you!
    We basically had the same concerns you list here, though she did respond and startle to loud sounds, but not voices, which didn't fit with her at all since she is VERY social and loves people and copying us. I only wish we got it checked out sooner. Hopefully it's nothing, but the best thing you can do is to see an audiologist and make sure.
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